Data Ethics- Privacy and Ownership in Bioinformatics

George Christopoulos

The level of disruption of new technologies in data science has unique problems when dealing with human data subjects. “Big Data” stands to disturb ethics and philosophy, which too often lag behind technological progress. Big Data refers to the destabilizing amount of data we can store, process, create new insights from and inform our theories with. The focus of this paper is the contemporary ethical issues around data, around the themes of privacy and ownership in the general context of bioinformatics and public health. Public health is broadly understood as having physical and psychological well-being components. I will take up the following general questions: How do we weigh the importance of individual privacy against public health? What data ownership structures are preferable going forward? I will argue that relaxed privacy laws are justified for gains in public health and data science in general. Furthermore, the reluctance to give up privacy could be minimized by structural and conceptual reforms in accessibility and ownership. Under a shared stakes model of ownership between collectors, utilizers, and generators most individual privacy concerns would dissolve. Part of conceptual reform includes appreciation of the positive gains to be had from data science and an understanding of the tradeoffs between progress and privacy. A holistic model is crucial to ensure ethical and sustainable growth, while eliminating some of the initial reluctance to give up personal information. A first-step toward shared stakes ownership is the adoption of Electronic Health Records by individuals and governments. Thus the scope of the exploration is the important relation between privacy, consent and ownership structures in biomedical areas. First, it is worthwhile to analyze the current climate around Big Data, including a discussion on the concepts “Big Data”, “Privacy” and “Ownership”.